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Tuesday, 1 November 2016

In the weeks since the BBC documentary A World Without Down's Syndrome? there has been a great deal of discussion around the subject. As with any good debate there have been many opinions shared, however there was one comment I read after an article in one of the leading online news sites that particularly upset me. It upset me because it was uneducated nonsense that someone at a vulnerable time may well read and believe. They were making fleeting statements as if representing 100% of families living with Down's syndrome in their lives. Implying that all siblings of children with DS suffer and are burdened by it somehow.

I'd like to share with you here a letter that my 13 year old son Harry wrote a couple of weeks ago. The school he attends had asked them to write a 'thank you' letter to someone, literally anyone, it could even be someone they don't know personally like a sports star / musician etc. Harry chose to write his letter to Rosie – A letter which I think goes a fair way to explaining how he feels about his sister and her 'disability', a viewpoint that is real, un-prompted and the voice of real-life experience and not one of an outsiders 'assumption'.

Dear Rosie,I would like to say thank you to you because you have taught me how to be a more understanding, well-rounded person. When you were born, despite how proud I was, I hate to admit that I was nervous, mainly because I did not understand the learning disability you have – Down's syndrome. You have taught me that having a learning disability is nothing to worry about and I also now see everybody as loving human beings no matter what learning disability or physical disability they may or may not have. I would also like to thank you for understanding me. Although you may not be able to communicate through fluent English with me, I really appreciate you smiling with me when I'm happy and comforting me when I'm sad. As well as that, pictures, videos and the presence of you make a lot of people happy. So, thank you from myself and a lot of other people.Harry

Yes it's true and natural that as parents we will worry about our children and whether or not they will feel burdened by having a brother or sister with a disability, however nobody can tell you their reality like a sibling themselves. I'm under no illusion that this letter represents every child who has a brother or sister with a disability but it certainly illustrates that they don't all suffer and don't all feel a negative impact.

I'm extremely proud of Harry for writing such a lovely note and for the fact it comes straight from the heart with no agenda other than to thank his sister for being who she is.